Abstract
BackgroundHuman T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world’s population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM/TSP), affects the nervous system. It causes sensorimotor losses, spasticity, muscle weakness, voiding and sexual dysfunction, pain, and balance disorders. There is limited knowledge of the feelings, experiences, and coping mechanisms associated with this neglected disease. The objective of the present qualitative study was to investigate the signs, meanings, and practices of people with HAM/TSP, through narratives obtained from focus groups and individual semi-structured face-to-face interviews.ResultsThirty-eight individuals diagnosed with HAM/TSP participated in the study. The following categories and subcategories emerged from the participants: Signs—physical signs, symptoms, and discovery of the disease; Meanings—reaction to diagnosis and knowledge of disease, fears, and expectations; Practices—daily life, leisure, religious, and treatment activities.ConclusionsPeople with HAM/TSP suffer from symptoms that limit their social participation, and they are affected by complex and multidimensional feelings. This awareness can contribute to the implementation of public policies—focused on the real perspective of these patients—that provide more directed, empathic, and harmonious care for these individuals.
Highlights
Human T-cell lymphotropic virus type 1 (HTLV-1) was the first retrovirus identified in humans [1]
Information analysis was based on the system of culturally constructed signs, meanings, and practices. It was conducted at the Advanced Physiotherapy Clinics (CAFIS) of the Teaching Assistance Ambulatory, Bahiana School of Medicine and Public Health, located in Salvador, Bahia, Brazil
Recruitment and sampling Enrollment in the study was intentional and voluntary; it occurred via an invitation that was presented to CHTLV participants who were participating in another research project [16]
Summary
Human T-cell lymphotropic virus type 1 (HTLV-1) was the first retrovirus identified in humans [1]. 3–5% of HTLV-1-infected people develop HTLV-1 associated myelopathy or tropical spastic paraparesis (HAM/TSP). It is a progressive neurodegenerative condition that predominantly affects the spinal cord and causes chronic pain, postural imbalance, sphincter and sexual disorders, and gait and balance alterations, all of which negatively impact quality of life [6, 7]. Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world’s population and causes several syndromes. HTLV-1 associated myelopathy, called tropical spastic paraparesis (HAM/TSP), affects the nervous system. It causes sensorimotor losses, spasticity, muscle weakness, voiding and sexual dysfunction, pain, and balance disorders. The objective of the present qualitative study was to investigate the signs, meanings, and practices of people with HAM/TSP, through narratives obtained from focus groups and individual semi-structured face-to-face interviews
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
